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Phoenix Rising Founder

Dr. Peterson noted a remarkable case of a patient who was in horrible, horrible shape - not as bad as Mike Dessin - but still just horrible shape - who recovered completely on Vistide. (COMPLETELY) It appears to be able to fight off those herpesviruses that cause so much trouble in one subset of patients.

But a friend of mine calls Vistide a chemotherapeutic like agent; its expensive and it, like many of the antivirals, can be hard on the body. Dr Peterson wants him to do Vistide next and he's balking right now.

Phoenix Rising Founder

That's great to hear - it's so hard to find other's experiences on drugs like this. That one case was really compelling - the guy was just in terrible shape - now he's back to doing carpentry. Good luck on the Vistide!

Phoenix Rising Founder

Great to hear Ross. All these antivirals seem to have the potential to cause dramatic side effects but as I recall no one on Montoya's trial experienced anything untoward either.

I do have some more questions. Was it the CMV and HHV6 titers that got him to get you on Vistide? Spinal tap results? Had you tried valtrex or any other antivirals? I wonder if this is his antiviral of first choice now? Does he have you on any other immune enhancing supplements?

It sounds like you've made substantial progress - sleeping, of course is a big deal and I equate cognition and the ability to deal with mental stressors as a bigger factor in quality of life than the ability to withstand physical stress (as nice as that would be!). The ability to exercise really does seem to be that final hurdle.

Hope you get to it. Good luck and thanks for all the info. (Love your avatar by the way!)

Phoenix Rising Founder

It is great to hear from a Dr. Peterson patient because we're so interested in going on over there. Thanks again.

I love that 'Valtrex is like Cool-Aid compared to Vistide' - that's great. As I remember Dr. Peterson has tried alot of alternative immune products with his Incline Village-like group and stated they just don't work well for them.

It sounds like it's helped with orthostatic problems? They're a real bear for alot of people; very tricky to treat it seems.

Senior Member

Perhaps there's a bit less definition in what I'm seeing than what you see? Perhaps there's a bit less definition around the heart itself, because I couldn't have said for sure that that's what it was. The shape is perhaps a bit shaded ...

Senior Member

I am very interested in your treatments. I see you have CMV and Vistide helped. Do you have any other pathogens??

I have tested postive for EBV, CMV, and HHV6. I also have a very high antibody titer to mycoplasma pneumoniae, over 1600. I work with Dr. Lerner and he has me on valtrex, valcyte and doxycycline. Did you ever take valcyte?? My hhv6 numbers has been coming down, but not CMV, it's exactly where it was when I started, 16 months ago. I believe the valcyte is for the CMV.

I have tried a series of alternative methods, too: nutritional IV's, accupuncture, neural therapy, prolotheraphy and homepathics. They made me feel better for awhile, but never held... Also, very expensive..

Senior Member

Ross,
Lots of good infomation there. I am writing both of these meds down, vistide and rifampin. I have never really heard of either one. My mycoplasma does not want to go down so maybe this refampin will help. I will search it. Have you ever used it???

I go back to Dr. Lerner the end of August and will discuss these meds with him. I moved from a 2 to a 4 with his treatment. I have seen improvement, but still pretty sick and can't hold it. One day I can do a little something and then I crash for 4-5 days.
Yuck!!

Thanks for responding. This is new information and I am always looking for things to try. Cindy

Senior Member

Thanks for taking the time to give us a good picture of your progress, Ross. I have EBV and HHV-6 and I'm starting vistide w/ Dr. P next week. Great to hear that your insurance company will cover it.
I would be thrilled to experience the cognitive clearing even if the physical improvement takes longer.
Fingers crossed for you, Ross!

Senior Member

I, too, can vouch that his office is very upfront about the risks. And they have a careful protocol for administering and are hyper vigilant about monitoring afterwards.

One should indeed weigh potential risks vs. benefits. In my case, the cost of not taking it is losing my career...guaranteed. As the main breadwinner in my family, that cost is unacceptable for the future of my spouse and child.

(But don't worry: Bill Reeves is hot on the case to end this disease so that in the future no more families are threatened...)

Phoenix Rising Founder

One thing the WPI is trying to do I think is to figure out why these drugs work in some people and not others. We know the right person responds very well to these drugs; some people respond fairly well and others not so well. I believe that part of this translational medicine the WPI is focusing on is determining through gene expression or whatever why patient X with CMV responds so well when patient Y does not.

That - and better drugs - would really move the field forward. Annette Whittemore in one of her talks said the WPI is on the cusp of a treatment trial in the US. Does anybody know anything about that?

Senior Member

I had my first administration of Vistide Monday (what a long process!) and I, too, had no immediate side-effects. (It sounds like when people have a bad experience they are reacting to the kidney-protecting drugs.)

Now we're checking my blood almost every day this week to monitor kidney and liver functions. Fingers crossed!

Great to hear that your numbers continue to improve, Ross, and that it's worth keeping up on the Vistide.